Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

B12 Deficiency Anemia?


HopefulMama23

Recommended Posts

HopefulMama23 Explorer

Hi all- I have been pouring over my test results, determined to figure out what has caused my latest bouts of symptoms.

My history:

After my 3rd child was born, I developed chronic D, lost a lot of weight, became very depressed and tired, and lost a TON of hair. I was tested for celiacs via blood test and the result was negative, but I have it in my family, so I opted to go on a gluten-free diet regardless. The diet helped, and things SLOWLY got better, with the fatigue the last thing to go.

But- recently I have had the seemingly opposite reaction, anxiety, rapid heartbeat, brain fog, insomnia, diarrhea, weight loss and further hair loss. I was thinking thyroid, so I pulled out my test results from 4 months ago to re-look at everything with fresh eyes.

In those results, my Free T4, T3, and TSH are all within "normal", but are all at absolute bottom of normal scale.

Here is what caught my attention- my MCH and MCV are both high- off the recommended scale. I looked that up and apparently it can be indicitive of a B12 deficiency. I looked THAT up- and the symptoms match mine exactly.

It also looks like a B12 deficiency can be pretty common with celiac's.

Anyone have any experience with this? Any advice? Any idea why 5 months into my gluten-free diet these symptoms would surface?

The funny thing is- I ran right out last night and bought a B12 supplement and took that last night with a Folic acid supplement (this is what I read to do). Maybe it was in my head, but I swear I feel better today.

Am I crazy?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



sb2178 Enthusiast

B12 deficiency typically takes a long time to surface-- your liver stores quite a lot of it. Vegans, for example, can go 10 years (often) before symptoms develop. Elderly folks whose stomachs stop producing enough acid to break it off the proteins it's connected to also often don't develop symptoms for 10 to 15 years. It's probably something that had been developing for quite a long time, and just coincided with the gluten-free diet.

In other suggestions, I'd check with your MD to see if they have previous bloodwork on file and can review it. One of those is genetic... don't remember which... so they can see how much it changed. Also, you may need shots if your intestines are not absorbing it. Might be a good idea to follow up on those symptoms too, just in case it is a thyroid thing that shifted enough to make it recognizable in bloodwork.

Liver, by the way, is an excellent source of B12.

laura4669 Apprentice

You might also check into other food intolerances, which can cause some of your most recent symptoms. I found out I was intolerant to most other grains, as well as dairy, potatoes and chocolate!

I also take B12, however, I need to take it sublingually since I don't seem to absorb it through my gut. As the previous poster suggested, you might check into whether you need something other than the capsules.

Judy3 Contributor

You might also check into other food intolerances, which can cause some of your most recent symptoms. I found out I was intolerant to most other grains, as well as dairy, potatoes and chocolate!

I also take B12, however, I need to take it sublingually since I don't seem to absorb it through my gut. As the previous poster suggested, you might check into whether you need something other than the capsules.

I do the same sublingual B12 every morning. If I forget it, I get the sores on the corners of my mouth by the end of the day :(

SoyBoy Rookie

With a B12 deficiency, it takes very little time to start feeling the effects of supplementation. So, it is possible that it is not

Debbie B in MD Explorer

So what should your B12 be? I don't have my report right in from of me, but I know mine was well at the low end of a very wide range. I know there is a reference range which I did fall into, but what about optimal??

mushroom Proficient

I personally found that my optimal is mid-range - mine was at the lowest end of normal, my MCV had been high for years with no alarm bells rung for doc, and my folate was also super low but still "normal". I felt improvement right away with B12 shots (am allergic to something in the sublinguals) and a B complex, along with a total 800 mg folate.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



SoyBoy Rookie

So what should your B12 be? I don't have my report right in from of me, but I know mine was well at the low end of a very wide range. I know there is a reference range which I did fall into, but what about optimal??

Maybe not the best site to reference, but here you go...

Open Original Shared Link

B-12 lab test: Measures an essential vitamin, B12, which can be low in hypothyroid patients due to low stomach acid. You are looking for an optimal B12 lab result at the top of the range. It is NOT optimal to simply be

HopefulMama23 Explorer

So I took my first B12 supplement Monday night before bed- and Tuesday was the best day I've had in a while- more energy, normal hair loss (not coming out like crazy like it has been doing), less anxiety, no trouble falling asleep, KP on arms was better. I thought I had found my answer!!

BUT- I took it last night before bed also and this morning was just as bad if not worse as I was before- hair loss in clumps, anxiety, fatigue, KP is back.

My test results do seem to show an issue- so I will continue to take it. Any thoughts on why I had a good day and then a bad day again? Is this just to torture me every time I seem to find hope?

Jestgar Rising Star

I take a B complex just for an energy boost (instead of coffee in the afternoon). It's one of those vitamins that it's hard to overdose on.

mommida Enthusiast

It might actually be Pernicious Anemia, which is associated with Celiac. The damaged gut lining does not have the intrinsic factor to process B12.

Find out your actual test results on your test and the ranges of "normal".

angel9165 Newbie

When diagnosed last fall w/ Celiac, my GI doc ordered B12 shots for me every other week for 6 months and now I go monthly. As far as my primary physician is concerned, this will be a forever thing for me...monthly B12 shots. Oddly, it was never mentioned that I should take a supplement. For me, I'd rather do the shot. :)

modiddly16 Enthusiast

I get b12 shots and have been for the last 5 months, I've been a celiac for over 7 years and it took a long time for it to finally get noticed, based on my symptoms I was still having a lot of celiac seeming reactions, but following the strict diet. In the 5 months, I've seen a boost in my energy and less pep in my step to the bathroom :) . "Normal" levels are between 300-900 and they like you to be somewhere in the middle. My level was 150, which my doctor called freakishly low. Even after 5 months of shots, I'm still only to 250, so my body is taking a bit longer!

Chiana Apprentice

The current recommended guidelines are 2500 mcg per day, if you suffer from pernicious anemia and take oral supplements. Personally, I think that the shot once a month is much much more effective than the daily doses...I've been getting them for years now.

modiddly16 Enthusiast

scratch that! apparently I'm at 209...haha the Dr. just called.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      30

      My journey is it gluten or fiber?

    2. - trents replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Disaccharide deficient, confusing biopsy results, no blood test

    3. - jenniber replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Disaccharide deficient, confusing biopsy results, no blood test

    4. - Samanthaeileen1 replied to Samanthaeileen1's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      7

      Thoughts? Non-endoscopic Celiac diagnosis in two year old

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,819
    • Most Online (within 30 mins)
      7,748

    Charlette Jillie-Martinez
    Newest Member
    Charlette Jillie-Martinez
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • xxnonamexx
      Is there a digestive enzyme that helps build a healthier gut? I see people taking them but not sure what really works
    • trents
      So the tTG-IGA at 28 is positive for celiac disease. There are some other medical conditions that can cause elevated tTG-IGA but this is unlikely. There are some people for whom the dairy protein casein can cause this but by far the most likely cause is celiac disease. Especially when your small bowel lining is "scalloped". Your Serum IGA 01 (aka, "total IGA") at 245 mg/dl is within normal range, indicating you are not IGA deficient. But I also think it would be wise to take your doctor's advice about the sucraid diet and avoiding dairy . . . at least until you experience healing and your gut has had a chance to heal, which can take around two years. After that, you can experiment with adding dairy back in and monitor symptoms. By the way, if you want the protein afforded by dairy but need to avoid casein, you can do so with whey protein powder. Whey is the other major protein in dairy.
    • jenniber
      hi, i want to say thank you to you and @trents   . after 2 phone calls to my GI, her office called me back to tell me that a blood test was “unnecessary” and that we should “follow the gold standard” and since my biopsy did not indicate celiac, to follow the no dairy and sucraid diet. i luckily have expendable income and made an appt for the labcorp blood test that day. i just got my results back and it indicates celiac disease i think 😭   im honestly happy bc now i KNOW and i can go gluten free. and i am SO MAD at this doctor for dismissing me for a simple blood test that wouldn’t have cost her anything !!!!!!!!!!! im sorry, im so emotional right now, i have been sick my whole life and never knew why, i feel so much better already   my results from labcorp:   Celiac Ab tTG TIgA w/Rflx Test Current Result and Flag Previous Result and Date Units Reference Interval t-Transglutaminase (tTG) IgA 01 28 High U/mL 0-3 Negative 0 - 3 Weak Positive 4 - 10 Positive >10 Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy. Immunoglobulin A, Qn, Serum 01 245 mg/dL 87-352
    • JoJo0611
      Thank you this really helped. 
    • Samanthaeileen1
      Okay that is really good to know. So with that being positive and the other being high it makes sense she diagnosed her even without the endoscopy. So glad we caught it early. She had so many symptoms though that to me it was clear something was wrong.   yeah I think we had better test us and the other kids as well. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.